Tag Archives: advocacy

Most of you have probably read Jim Sinclair’s famous essay Don’t Mourn For Us. If you haven’t, do. In the Loud Hands: Autistic People, Speaking Anthology a version of that essay comes after Julia Bascom’s wonderful Foreword. By the way, if you didn’t see the Huffington Post interview I did with Julia regarding the anthology and future projects, you can read that by clicking ‘here‘ and I’ve also embedded a link so those of you who haven’t read the Anthology can buy it and read, because.. well this book needs to be read by every person on this earth AND it’s now available in paperback as well as on Kindle, so who can resist? Here’s the “link” (again) to buy it. Full disclosure – I bought this book for a number of my family members and gave it as a Christmas gift!

I read the anthology as a PDF file first, then I read it again in paperback and now I’m rereading it with my highlighter in hand. There is not a single essay that has not been streaked with neon green highlighter. The anthology has contributions from a wide range of people (a few of my favorite writers are missing, but I am hoping this anthology will be followed with a second that will include writing from E. of The Third Glance (not to be confused with “E.” who is in the current anthology), Aspie Kid, Michael Scott Monje Jr and Sparrow Rose Jones to name just a few.) It’s not the type of book you can really quote from as each piece needs to be read in its entirety to get the full weight and power of it.

Having said that, I have to quote Jim Sinclair and hope that all of you will get the book and read it from cover to cover. Jim wrote, “The ways we relate are different. Push for the things your expectations tell you are normal, and you’ll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.” “… you’ll find a world you could never have imagined.” This has been my experience, exactly. I think I’ve even said something close to this before. I believe I’ve said finding Autistic voices and reading their words was like being presented with proof that another universe exists, but that I never knew about. So for all of you who need or want proof that another universe, a more wondrous and fantastic universe than is imaginable, read the Anthology and be prepared to have your world changed in the best possible way!

One of Emma’s favorite Imax movies is about the Hubble Space Craft found to have a faulty lens and requires repair. Once fixed, it produces absolutely hallucinogenic images of the universe that are so beautiful it is hard to believe they are real. To me, autism is like those images, beyond anything I could have imagined.

A year ago, I would have gone to a parent/teacher conference and not thought twice about my daughter being in the same room while we spoke about her. Six months ago, I knew enough to know that she understood what was being said even if she didn’t indicate that she did and would move to another room or arrange for child care during a conference so she would not be present.

This morning I received a passionate comment from someone who was responding to another comment about parent/teacher conferences. You can see the whole comment by going to yesterday’s post, but she ended with this:

“These things can ONLY happen in context of a culture of acceptance of the exclusion of Autistic people from discussions about our own lives, and of acceptance of the ‘need’ to speak of us in negative inaccurate terms because that supposedly fulfills some ‘need’ that will bring us help and support. It doesn’t EVER bring us the support we actually need because negative inaccurate information ‘about’ us means any support is founded in untruth and therefore is not help and support of US as the ACTUAL human beings we are.

PLEASE, if you truly want to help Autistic people, stand up for our right to be part of the conversation about our own lives from a VERY young age. Advocating FOR us is GREAT, but ONLY if the purpose of that is to support us in our SELF-advocacy… and to put pressure on professionals to accept OUR voices and OUR choices as the determining forces in OUR lives.”

My initial reaction was a defensive one. My first thought was – but children are never present at parent/teacher conferences. And then I realized that isn’t true. My son Nic is asked to attend our parent/teacher conferences and has been required to attend them since he entered middle school (the fifth grade, the age Emma is now). My second thought was, but what if one of her teachers or an aide said something awful about Emma in front of her, what if they spoke of her in language that would be hurtful? I can’t control how others speak. But then I realized that were this to happen in my son’s presence I would not hesitate in saying something in front of him to that person. I would correct them and tell them why it was unacceptable and he would hear this and understand that this person was wrong in speaking this way about him. Then I thought, but wait, we might need to discuss topics that might make her sad, things about self-injurious behaviors or how she ran out into the hallway and it wouldn’t be appropriate for her to hear these kinds of conversations, but again I thought of my son and realized how we would include him in the conversation. As I went through the various reasons why I couldn’t do what the commenter suggested, I saw quickly just how insidious the ingrained prejudices regarding autism are. I saw how I still have so much more to learn. And so I continue to and I tweak my thinking and my behavior and then someone else tells me something and I have to think about their words and then I have to tweak my behavior some more.

Directly after reading this thought-provoking comment (I am so grateful to the writer for having sent it) I received an email from someone I care deeply about. I do not have explicit permission to write about the specifics so I will not, but it was about where these kinds of ingrained beliefs can lead. It was about abuse. It was a story I am becoming more and more familiar with. It was about someone I know. It was about a defenseless, nonverbal child. It was about more than one event. It was about many, many abuses occurring over and over by many, many different people. My horror is never lessened no matter how many times I hear of this. In fact my horror increases. What I used to believe, what I used to console myself with, that these were unusual, isolated instances of horrible people behaving in heinous way, is not something I can cling to any more. These stories are everywhere and I am hearing them all the time now. I cannot console myself that they are unusual. I can no longer wrap myself in a cocoon of optimistic assurances that this hasn’t happened and will never happen to my daughter, because even if we are lucky enough that they do not happen to our specific child, they are occurring constantly to other people’s children. How is that any better? How is that any different?

The abuse of people who are considered “less than” and “incompetent”. The physical, sexual and emotional abuse that Autistic people and children are having to endure at the hands of people ALL THE TIME that they come into contact with, at school, their care givers, the people they are suppose to be able to trust, their relatives, neighbors, the list goes on and on. This is going on around us and to those we love and care about. This is about people who are hurting, not just our children, but people all over the world who are deemed “less than”. This is so much bigger than “our children”.

As I wrote yesterday I went to a meeting at the UN – The Fifth Conference of State Parties to the Convention on the Rights of People With Disabilities moderated by Juan Carlos Brandt, Chief, Advocacy and Special Events, Department of Public Information, United Nations. The specific event I was invited to attend entitled: “Urgency and Hope, Report from Global Leaders in Autism Research, Education, Treatment and Policy” Joshua Weinstein, CEO and Founder of the organization, icare4autism, presented with Stephen Shore, Beth Diviney and Eric Hollander presenting as well. ICare4Autism is the organization that invited me to attend their conference in Jerusalem this past August, which I wrote about.

Juan Carlos Brandt and Joshua Weinstein

I asked an Autism group I’m a part of whether anyone had messages for me to take to the event and a number of people wrote things such as A. who asked that I say something about “using a functioning level (usually an assumed one) to silence someone is never ok” and S. who wrote “Disability Rights are Human rights. More specifically Autistic Rights are Human Rights. We deserve to be treated as equals.” Several asked that I stress the need for all to presume competence and P. asked that I be sure to say, “don’t assume I have nothing to say, just because I do not speak.” But the first person who reached out to me was Henry who sent me this:

He wrote: “Could you please tell them I would like to be included and learn with friends my age and where I live? I wrote this.”I am a self advocate. I want the same rights as everyone.

Today I read about Martin Luther King.The worksheet said because of Dr King’s work, the Civil Rights Act of 1964 gave equal rights to all people.I am a person.I want these rights.

I want to go to school in my neighborhood.

Why can’t I?”

Joshua Weinstein and Juan Carlos agreed to allow me to show Henry’s video, but when they tried to run it, they weren’t able to as evidently the internet was down in the entire building. (It’s the UN! And we think we have technical problems!!) So as they were trying to get the video up and running I read some of the quotes from others. I’m sorry Henry! But I’m going to keep trying. I know many others are too. To everyone reading this, please watch Henry’s video and “like”, comment and share. This is one person’s struggle, but it represents the struggle of so many.

Yesterday was one of those days when everything felt harder, everyone seemed grumpy, everything seemed to go wrong. Yesterday felt like this:

By the time I got home I didn’t even try to conceal my irritability. “You okay?” Richard asked when he saw me walk in. “Just feeling out of sorts.” Richard nodded his head.

I stayed away from everyone, tried to keep my interactions to a minimum lest I take my grumpiness out on my family. After an hour or so I could feel my mood lifting. Richard and I had the following conversation.

Me: Standing in doorway Hey honey?

Richard: deeply engrossed in writing Uh-huh?

Me: What do you think about having some down time, you know, just you and me?

Richard: still writing Yeah. That sounds good.

Me: Still standing in doorway Um. Yeah. Like, you know. Just the two of us.

Richard: Looking up from the computer. Yeah. Okay.

Me: Continuing to stand in the doorway

Richard: Yeah Big grin. I’d like that.

Me: Reaching for “Autism is a World” DVD Great! Cause I’ve got this autism video I’ve been wanting to watch with you… Waves video in the air.

Richard: confused look, trying to assess whether I’m being serious. He knows me and knows this is just the sort of thing I might suggest, though the previous dialogue suggests otherwise. So he’s trying to figure it out. I can see him going through the mental gymnastics.

Me: Laughing

Richard: Look of relief.

Me: Does a little dance.

Richard: Glad you’re feeling better.

Fade to black

*As my friend Ib would say – on a lateral side note – I am off to the UN today for The Fifth Conference of State Parties to the Convention on the Rights of People With Disabilities moderated by Juan Carlos Brandt, Chief, Advocacy and Special Events, Department of Public Information, United Nations. I intend to speak up about the need for including Autistic voices (emphasis on the plural) at any and ALL meetings such as this one. Wish me luck. It’s a beautiful day!

I attended the ICare4Autism conference in Jerusalem last week. I wrote about this not long ago in the post Synchronicity, Jerusalem and Autism. As a quick recap Jerusalem was the place Richard and I had intended to go for our honeymoon. Not six weeks before we were due to leave, the intifada broke out, forcing us to abandon our plans. That was thirteen years ago. This past May I received a letter from the “State of Israel” inviting me to be their guest.

In addition Dr. Henry and Dr. Kamila Markram were presenting at the conference. They are the neuroscientist team who came up with The Intense World Theory For Autism, the only theory to date that has validated my observations of my ten-year old daughter, Emma. When I read they were going to be in Jerusalem this past winter I joked with Richard about how amazing it would be to meet them AND go to Jerusalem. At the time we just laughed at the insanity of the idea and went on with our lives. Then the invitation arrived. I knew it meant I would need to write about the conference. Writing about the conference was why I’d been invited.

Except I do not consider myself a “journalist.” I am not an impartial, unbiased observer, prepared to provide an even-handed summation of my observations. I am highly opinionated and exceptionally biased in my ever evolving perspective on autism. I regard the motivations of most so-called autism advocacy organizations with suspicion and even outrage. I am frequently hostile in my view of the self-appointed Autism experts, medical charlatans and other “professionals” who make a living off desperate parents, like myself. If I had all the money I’ve spent on the various “cures,” biomedical interventions and dubious therapies we have employed over these past eight years, I wouldn’t have cared about an invitation providing me with airfare and hotel accommodations.

In less than a year, my perspective has radically changed. Had I attended this conference last August my focus would have been on meeting as many researchers and doctors as time would allow. I would have spent each break roaming through the many tables set up outside the conference rooms selling all manner of goods purported to help a child with Autism (and yes, that is how I would have described my daughter – a child with Autism) hoping for something that would cure my daughter with the same longing and desperation that had dragged me from one “specialist” to the next for all those years, not so very long ago.

But that was before.

That was before we began implementing Emma’s literacy program. That was before Emma showed signs that something we tried could and would work. That was before I read Henry and Kamila Markram’s Intense World Theory. That was before I began reading the blogs of Autistic adults and as a result began communicating with a number of them (see yesterday’s post). Suddenly, and it really was relatively quick, I began to view my daughter through the eyes of someone seeking to understand rather than fix. I began to see her actions, whether it was stimming or echolalia or self-injurious behavior – as her attempts to communicate rather than aberrant behaviors that needed to be quelled and eliminated.

Was ICare4Autism going to be different than any of the other organizations out there promoting interventions, therapies and the ever illusive and questionable promise of a cure? The information I compiled prior to the conference did not look promising. But, I kept reassuring myself, the Markrams would be there and if nothing else, I had set up an interview to speak with them. Beyond that there seemed little to distinguish them from any of the other organizations using “autism” in their name. Still I went to the opening dinner with an upbeat, hopeful attitude, eager for a better idea of the organizations intentions. When the opening video played I consoled myself that at least the distraught parents filmed were not openly weeping and talking about their distress in front of their children. By the way, just in case anyone misunderstands me, less than two years ago I could have been one of those sobbing parents and I would have wept in front of my daughter and spoken of her with the mistaken assumption that she couldn’t understand. It would not have occurred to me that hearing her mother speak of a desire to cure her might have made her feel horrible, sad and depressed, things she wouldn’t be able to communicate to me, which would only further her sadness and feelings of isolation. I get it. Really I do.

The conference began with a Welcoming Ceremony with a speech from the founder and CEO, Joshua Weinstein, who called for communication and collaboration. He spoke of plans to move their headquarters to Jerusalem, a city with a long history of misunderstanding and strife, making his call for communication and collaboration all the more significant. The Mayor of Jerusalem, Nir Barkat spoke of his pride in hosting the ICare4Autism conference and eagerness in it becoming a world center for Autism research. Dr. Shekhar Saxena, director of Mental Health and Substance Abuse at the World Health Organization spoke briefly as did a number of others. And then the Autistic Boys Choir got on the stage. Seven teenagers began to sing, their voices rang loud and clear, their pitch was perfect, their enthusiasm and joy infectious and the audience began to weep. I was right there with them, madly rummaging around for my kleenex, trying not to let out too much noise other than the odd sniffle. I wept from sheer gratitude, because these teenage boys/men were like my daughter. One young man in particular who clearly reveled in performing reminded me of Emma. So yes, I wept from relief, from joy, from seeing Autism shown not as a tragedy, but as difference and of hope for what can only be described as the possibilities, not just for our children, but for us as a society when we hand the microphone over to those we say we care about and want to help – Autistics.

Over the course of the next day and a half I tried to meet with Joshua Weinstein, but for a variety of reasons, wasn’t able to. Then finally in the afternoon of the last day of the conference, I saw Joshua Weinstein and mustered up the courage to approach him. I spoke to him about why the Autism = Tragedy model needed to be discarded, that while it may get people to write checks it was an unbalanced view, completely disregarding the feelings of Autistics (our children) who are being sent the message that they make their parents and families desperately unhappy, the very people who are supposedly trying to help them. Josh was not only kind and receptive, but later thanked me for coming over to him. He assured me that he really was interested in communicating with Autistics and would take me up on my offer to introduce him to a number of people I know, both verbal and nonverbal, and am in contact with.

Josh invited me to be on the advisory board, which I’ve agreed to. He is working with a number of people at the UN, as well as WHO (World Health Organization) and asked that I attend the UN meeting. He has, since we spoke at the conference called and we are in email contact demonstrating his sincere desire to follow through with his promises and words. Am I surprised? Yes. I am. But more than that I am hopeful. Hopeful that ICare4Autism will actually include the very people they say they care about by putting them on their advisory board and by listening to them as they develop and attempt to fulfill their mission in becoming a world-wide Autism organization that does more than pay lip service to those who are Autistic.

“Caring about autism – what we know of it and how we put it in our narratives – is something from which all manner of people can and must benefit.” Representing Autism Culture, Narrative, Fascination by Stuart Murray

The icare4autism conference ended this afternoon. It was a whirlwind of activity spanning 48 hours of discussions and presentations led by scientists, therapists, neuroscientists, policy makers, parents and advocates. Stephen Shore, who is Autistic, gave the single most entertaining presentation, entitled: Employment Opportunities for People with Autism: Observations on Promoting Success.

On the first day I interviewed Henry and Kamila Markram, the neuroscientists who came up with the Intense World Theory of Autism, the only theory I’ve read and heard that makes any sense and which validates my own observations of my daughter, Emma. Yesterday I spoke with Joshua Weinstein, the CEO and President of icare4autism. He seemed genuinely interested in hearing from people. He actively sought out suggestions, made himself available to anyone who approached him. He seemed sincere in his desire to bring scientists, therapists, parents, researchers, educators and advocates together.

The organization’s weakest point is in having Autistics on their advisory committee. According to the sheet I received there aren’t any, and only one Autistic person, Stephen Shore, was at the conference presenting. Perhaps after today’s conversation that will change. I hope so. I would like nothing more than to write glowingly about an organization that carries the word “autism” in it’s name. I spoke out whenever it seemed even remotely appropriate. But by the end of the conference I had made my – Autistics must be included in this organization -speech more than a dozen times. Only once was I met with any argument and interestingly enough, that one time was from a parent of a “severely autistic child” as she described him, who was furious with me for suggesting we needed to move beyond the autism = tragedy model.

There is tremendous misunderstanding surrounding labels and the designations of low, high, severe and mild. It was clear that people do not understand why these labels are unhelpful and the terms were thrown around a great deal during a number of the presentations I attended. Another huge misperception surrounds intelligence or “lack” of in Autism. I was astonished to hear the words “mental retardation” used in connection with autism during a couple of the comments from the audience. I hadn’t realized that was still thought, by many, to be synonymous with autism.

The really good news is, I heard questions surrounding the “ethics” of various treatments and interventions for Autism and I was relieved to hear a number of people talk about the abuse, mistreatment and need for greater advocacy among the Autistic population. Of course the best advocates are Autistics themselves and so I hope icare4autism will heed some of my suggestions. I was not the only one making these suggestions, by the way. There were a number of people, including Stephen Shore who was wonderfully articulate in his opinions and ideas, who brought up the need for Autistics to represent themselves and the importance of Autistics to be involved in all levels of any organization that carries the word autism in its title.

Finally, I miss Emma terribly and cannot WAIT to see her this afternoon.